COMMENTS ON R EPOCH

Jian said:

Yep
I was diagnosed in July with primary mediastinal large b cell diffused lymphoma. Stage 4. It had spread to my kidneys and bones.
I have one more cycle of R-epoch.
I had a PET scan after cycle 3 and it came back normal. My specialist decided to do the 6 cycle regime = 3 mop up cleans. They harvested my stem cells after cycle 3 for insurance.

I was told the subtype is rare, more common in young
women and v aggressive which is good because the mutant cells have a very short rest cycle.

I have spiked a fever twice thus far. Once after cycle 1 when my counts were up and another time during neutropenia. It might happen again but I always get to ED when my temp hovers near 38 degrees- celsius (I'm Australian).

I have gotten through this experience by learning as much as I can about the disease.
Feel free to ask me anything.

Jian said:

Danboy
Hi Danboy,

Hope you are still checking this board.

RE: Nausea/Fatigue

Every morning of chemo, the nurses gave me tropisetron either in capsule form or through IV. If I was too nauseated they gave it to me through IV. This was a long lasting antiemetic and I was fine until the evening, where I asked for an ATIVAN/LORAZEPAM - which was originally given to me as an anti-anxiety pill. The doctors told me that it also works well as an antiemetic - anti-nausea pill.

I was sent home with tropisetron, chlorpromazine and ativan. I only ever took ativan when I was at home.

The first cycle of chemo was the toughest because I had no idea what was going on. The 2nd/3rd were fine, but my nadir wasn't low enough. On epoch-r, your neutrophils have to dip below 0.5 X X10E3/uL. I didn't go low enough with cycle 2/3, so they increased the dosage for the last 3 cycles. The cumulative effects were rough.
I became more fatigued and between cycles I was pan-cytopenic for longer. At the time I kept begging them to reduce the dosage because I felt as if I were dying. I couldn't even walk to the toilet without someone helping me and I had to have blood transfusions. But because my bone marrow picked up before each chemo, they didn't reduce my dosage.
At the time, it was awful, but now that I'm out the other end, I'm glad they did what they did because it gives me some peace of mind knowing that there was little chance of a rogue microscopic cancer cell surviving the carpet bombing. So being fatigued isn't such a bad thing, because it's a sign that the chemo is doing what it's supposed to do - ie. wipe out your cells.

By the end of my six cycles I was a physical wreck. It's been two months and I'm still really tired. I have good days and bad days, but it took me about 3-4 weeks post my last cycle before I could spend a whole day out of bed.


Re: Stem Cells.
They were harvested mid way through treatment, and the original plan was to do consolidation STC, but because I had a clean scan mid way through treatment, they were happy to complete the 6 cycles of EPOCH-R and watch and wait.

If I relapse, line 2 treatment is the SCT.

Jian said:

I had 2 transfusions of red
I had 2 transfusions of red cells.
I was not on an antacid. I was given allopurinol in cycle 1/2 but not after that.

It's harrowing but he will get through it!
The good news is that they have had excellent results with epoch.

bobnkay said:

in 2nd treatment of R Epoch
Hi Danboy: I was glad to read that your 2nd round of R Epoch had less side effects than the first time. I am currently in my 2nd treatment but I did not have to go to the hospital for it. I get part of the drugs in the Clinic and go home with a mixture in a small pump. This makes it so much nicer to be home, with family, and just let the stuff drip in me day and night. I haven't had the vomiting problem you had but I also have low blood counts. I have had several blood transfusions, but not since I have started R Epoch.
I hope the treatments continue to cause less side effects for you.

From what everyone says, the treatment does work so I guess we'll have to struggle through it.

Hi my name is Alyssa and I was diagnosed with primary medialstinal large cell lymphoma this past June. I have gone through 4 rounds of R-EPOCH. My PET scan was today and my SUV went from 14.36 to 2.88. My doctor told me that the low activity could just be scar tissue or it could be active cancer cells. We won't know for sure until I get another PET scan after my last round (6). MY hope is that there will be absolutely no activity after round 6. I want to avoid a stem cell transplant. Has anyone had a similar experience?